My Portal Hypertension Journey

This blog was created for those seemingly uncommon few (like myself) who are living with this often discouraging condition called portal hypertension. Through this “work in progress” I hope to encourage, inform, and provide a comprehensive forum for fellow sufferer’s, their family members, or their friends. In my personal quest to find others struggling through the side effects of this disease, I came to realize that there really wasn’t a one-stop site that provided all the things one might be looking for when dealing with a disease of this nature. All this being said, I want to extend a heartfelt welcome to you and most of all I trust you find information and solace from within. You are not alone in this journey!

Who are you?

My name is Clint Steenson, and my personal journey with Portal Hypertension began in the summer of 2002. Within months after starting a new business, the loss of my father, and 4 trips to the emergency ward of 2 local hospitals, I was shocked to learn that I had Portal Vein Thrombosis (PVT). After a week in the hospital I spent the next several weeks recuperating. Providentially for me, I was re-hired by my former employer, who I had worked for prior to starting my business to be their national sales representative. After a little over 2 year’s of employment and virtually no symptoms, I was re-admitted to the hospital in the early part of December of 2004 with severe pain and bleeding. It was then discovered that I had a clot to my superior mesenteric artery which explained the pain, and the bleeding at that time was from varices in my stomach. Again I spent another week in hospital, was released and took the next few week’s off work. I returned to my employment in January of 2005. After only 5 weeks back at work, I took ill again and was re-admitted to hospital with pulmonary embolisms (clots to both lungs).

As one may expect I take a boatload of medications which is necessary to stave off further clotting, and relieve pressure to areas in danger of bleeding due to the existing clots. It is suspected that my condition was started by an underlying genetic defect and at the time there were only 7 known defects, however all tests were returned negative. The most common and yet deadliest side effect to portal hypertension is a condition called esophageal varices. Varices are formed when arteries on the wall of the esophagus protrude inside because of pressure from the clot. Varices are graded on a scale of 1 to 3, with 3 being the most likely to bleed. Gastroentrologists can discover and grade the varices while doing a gastroscopy. In my case, my specialist discovered that I had 2 columns of grade 3 varices – grade 3 being the most deadliest. At the time of my last scope, it was determined that it was too dangerous to even check the condition and all future scopes were discontinued.

In October of 2007 my doctor’s strongly advised that I stop working as that would take much stress off my life. I heeded their recommendations, and fortunately was able to obtain long term disability benefits from my former employer, plus a government medical pension from which I understand is most difficult to get unless one has a condition such as I. As one may imagine my medications are very expensive so I am extremely grateful that the costs are covered by a plan, otherwise I do not know where I would have been without it? Of course there are the daily challenges of raising a family on a limited income, but I am still grateful for what has been provided and I carry on despite all this.

In summation, my life is filled with seemingly endless blood tests, iron infusions, doctor’s appointments, and all too frequent bathroom trips – not to mention some associated pain! Despite my condition I remain very optimistic and for the most part don’t dwell much on the negative aspects of this disease. I believe God has spared my life, and I have peace about the future. What is your story?

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122 thoughts on “My Portal Hypertension Journey

  1. Unwavering

    Hello Clint,

    I am very grateful that you started this blog. It is not a common condition and people being diagnosed are left without much information, many times having to rely on their doctor’s opinion. You have found a way to help others with your difficult situation.

    After reading other posts, I wanted to briefly share our story. I dont know anything about the rex shunt for adults but we are experiencing the story for a child.

    Our son, almost 3 years old now, was diagnosed with portal hypertension and cavernous portal vein. We don’t know the cause yet. After several Imaging tests, he appears to be a candidate for the Rex shunt procedure to relieve the pressure and restore a more normal circulation. So we are now holding onto this with all of our strength.

    What I would like to share in particular is that a while back, the doctors’ tendency for a young child was more of a wait and see approach. I have been told that, with time, they have observed that the condition can have an impact on cognitive development, over the years. As a result, it is now believed that, although the rex shunt is a delicate surgery, it is better to intervene young and prevent complications such as varices and all.

    It is a leap of faith because several people seem to lead a relatively normal life without the surgery. Putting our son through this is heartbreaking but if it can allow for a life without, or at least with fewer, complications, we will leap.

    If you have a young child with this condition and you have been told to wait and see, I would say, turn to the known specialists mentioned in this blog.

    Clint, I wish you a long life, free of further complications. Science continues to evolve and your mysterious condition may become understood and even treated. Again, thank you for sharing your story and information to help others.

    Reply
    1. Clint Post author

      Hi Carole,

      Thank you so much for sharing your story, and thank you for your kind words. It always saddens me when I hear of children with the condition, but on the same note there are options proven to work in order for them to live healthy productive lives. There is a new surgical procedure that was recently developed which I learned of several months ago from the key research physician himself Dr. Raid Salem. Here is the link if you would like to see what it is all about: https://www.portal-hypertension.com/2020/03/non-surgical-procedure-portal-vein-thrombosis/

      I don’t know if this would be an option as this point in your son’s life, but this same doctor practises in Chicago near the Lurie Childrens Hospital at Northwestern University. I can send you the actual case study if you are interested – just let me know.

      I also wish your son a long live free of further complications. Take care and God bless, Clint

      Reply
  2. Pema

    Helo Clint
    My son Age 19 who was diagnosed PVT Cavernoma transformation last year and doctor said it PVT with jak 2 positive And doctor asked to do bone marrow biopsy but haematologist said no need to do bone marrow biopsy as PVT patient use to have Jak 2 mutation like 30% and discharged with warfarin for six months.After six month we reviewed but clot has not dissolve.Now doctor has advised to do endoscopy and keep on warfarin and take advice from haematologist and haematologist asked me to do his CBC and after cbc result hematologist said reports are normal so keep continue warfarin for six more months.As you are aware everything about this disease so what will you advice me.I have strong faith in God and I always pray for everyone everyday.

    Reply
    1. Clint Post author

      Hello, I am sorry for not repsondkng sooner, but your message ended up in my SPAM folder, which I am not in the habit of checking too often.

      Anyways I am sorry to hear about your son…he is young and to me makes it harder to take. On the bright side given what you have said about him and how the doctors are treating him, this is standard protocol. Depending on where you are located in the world, there may be more solutions for him of a permanent nature. Let me know and I will try to direct you to those resources. Blessings. Clint

      Reply
      1. Pema

        Helo Clint
        Thank you for your response. I am from India and wanted to connect with dr Riad regarding my so’s case. I wrote several mail to your given Mail Id of dr Salem but I didn’t get any response from him.Right now he is on herbal treatment and it is working to keep his blood thin but his spleen got 17.25 cm.Kindly help me to connect with dr Riad Salem.

        Reply
        1. Clint Post author

          Pema,

          Sorry for the delayed response. Here is Dr.Salem’s contact information:

          Riad Salem MD MBA
          Professor of Radiology, Medicine and Surgery
          Chief, Section of Vascular and Interventional Radiology
          Vice-Chair, Image-Guided Therapy
          Department of Radiology
          Northwestern University
          676 N St Clair, Suite 800
          Chicago, IL USA 60611
          1-312-695-6371 office
          1-312-695-0654 fax
          His email is: rsalem1@nm.org

          Reply
  3. Greg

    Thank you, Clint for providing a valuable conduit for information regarding PVT for patients and their families with PVT.

    I have had PVT since birth, and as a consequence, have experienced 2 major bleeds from my esophageal varicies when I was in high school. As a lifesaving measure to decompress my esophageal varicies, I had a Splenorenal shunt created to prevent future bleeds. I was blessed to have been put under the care of two distinguished physicians and exemplary individuals: Gastroenterologist, Dr. William Baldus, and surgeon, Dr. Martin Adson, both doctors at the Mayo Clinic.

    I began to experience the gradual onset of hepatic encephalopathy in my mid 30’s. As I have aged (now 57) I have had a growing list of health issues tied to PVT. Although I have not had any banding of my varicies done for few years now, I still have esophageal and gastric varicies.

    I am writing this entry because I now feel a sense of hope for me and my family. I am grateful to Dr. Riad Salem, another distinguished physician and exemplary person who is an interventional radiologist at Northwestern University Medical Center in Chicago. Dr. Salem was able to place a stent in and through what was the cavernous transformation of my portal vein and and connect my atrophied liver with an entirely new supply of blood from the nexus of my Inferior vena cava and splenic vein. The initial transformation was very significant, and I continue to do well. It is my understanding that improvement in the symptoms of PVT and hepatic encephalopathy as my body adjusts to this welcome change.
    Dr. Salem, his colleagues and staff at Northwestern University are among the best of the best. After surgeons attempted a REX shunt on me at another institution in 1979, albeit unsuccessfully because of the atrophied condition of my liver, I was resigned to the prospect that I would never experience the benefit of an open portal vein. Dr. Salem and his colleagues have helped me and many others realize the many benefits of an open portal vein.

    Reply
    1. Clint Post author

      Thanks Greg for your valuable input! Appreciate what you have gone through all these years, and am happy you are now on the road to compete healing. Appreciate your friendship and encouragement though all these years since I began writing this blog. Through you, many other patients, doctors, and my personal research I have learned much. Although this new procedure may not be for everyone depending on their complications, I do hope many more folks can have this done and go on to live normal lives without the pending dangers of this anomaly hanging over them. Thanks again!

      Reply

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